Belarus: ‘My doctors told me – this is the only chance’

Yury, 38, is celebrating a moment he thought would never arrive: he has been cured of a complicated form of tuberculosis (TB), an infectious disease caused by mycobacteria which usually attacks the lungs. But a cure for Yury is also a milestone for MSF: he is the first patient to complete treatment at MSF’s TB treatment programme in Belarus, run in close cooperation with the Ministry of Health (MoH). The programme started in the summer of 2015, with revolutionary new TB drugs supplied through MSF’s endTB project (endTB.org). By that time, Yury, together with his doctors had been fighting the disease for two years, facing a form of extensively drug resistant tuberculosis (XDR-TB). Treating XDR-TB is a lengthy and difficult process because this form of the disease is resistant both to 1st and 2nd line TB drugs.

Despite sitting in the blazing sunshine, Yury does not take off his thick jacket. He explains, ‘I’m afraid that I can catch a cold in the draught somewhere, and that would be stupid…’ Our conversation about his recovery takes place amidst the hubbub of children’s voices. We are sitting on a bench beside a river bank in a big children’s park in the centre of Minsk. The kids sweep past us on their scooters and their mums, in summer dresses, can hardly keep up with them. Yury says he made a promise that while undergoing his last chance of treatment he would take care of his health and not risk squandering what he calls a ‘lucky’ opportunity.

Yury learned he was sick in 2013. ‘For some reason I started losing my appetite, I felt weak. I was losing weight, others told me that. Then I got a fever. I went to the polyclinic, I thought it was a common cold. They did an X-ray and even found a small hole. As soon as I had my chest X-ray results they asked me: Do you know what you have? I said: How would I know?! Then they said “You have a suspected case”’… - He stops before ending the sentence. That’s because when speaking about TB, Yury rarely mentions its name. When asked why, he tells me that after learning about what it was, he became too scared to even mention it in public. He was in a state of panic for several months and not so much afraid for his life or health but more concerned about the reaction of the others.

‘I thought everything had ended. That everybody would turn away from me. As they say: I’d be like a leper to others if they learn. I was hiding this for a long time when I was in hospital already. Not from my family though. On the contrary, I told them about my situation. So that they’d check themselves just in case. You never know… But I was hiding this from the others,’ he states matter of factly.

After a year of treatment, doctors found his first attempt at treatment was a failure. Yury’s XDR-TB was resistant to the medicines that were available at the time. ‘When they poured more than 20 (pills) before me everything went dark before my eyes. And of course they make you feel really sick. Such a high dose at once. You feel nauseous, weak. God forbid. You’re feeling sick permanently. And it wasn’t just me who felt like this, everybody had it. In the morning they take the drugs and you won’t see anyone until the evening. Because everybody’s lying in bed. Somebody would throw up at once, others later,’ Yury continues.

Several times it seemed that the disease had abated and the tests would come back ‘clear’. But in a few months’ time they would be ’positive’ for TB again. Just when he’d begun to lose hope, the doctors told him about a new treatment program, from MSF. Yury agreed to be admitted for treatment with MSF at once.

‘My doctors told me – this is the only chance. I had an advanced process with lung cavities growing already. It was getting worse and worse. I had drug resistance. They told me existing drugs won’t help,’ Yury recalls. ‘And then it was immediate – in two days they inserted a port (an implanted system for continuous intravenous infusions) and the treatment started. Imipenem, Bedaquiline and several other medicines, that’s it. And I started to improve immediately. I didn’t feel better, I had no appetite. But the tests, the X-rays – everybody was surprised! They said: “That’s something! It’s fantastic! You have such a good dynamic!” Excellent dynamic. And already in October I had clear tests. Everything was clear. Everybody was surprised – nurses, doctors. And of course they were telling me don’t even think of skipping the treatment, you need to continue it,’ he adds.

MSF’s Dr Mikhail Khmyz says the MSF program targets patients with the most challenging forms of the disease. ‘The first patients we admitted were people on palliative treatment. It means they were receiving treatment for the relief of their symptoms, but no TB treatment’. That’s what happens when a patient has suffered repeated failures of treatment and the strain of the infection is resistant to available medicines. The last hope for these patients are Bedaquiline and Delamanid, the first new TB drugs developed in nearly 50 years.

Since mid 2015, the Ministry of Health of Belarus has had these new TB drugs at its disposal, thanks to a grant from the Global Fund. But it’s not enough to supply all those in need of the treatment, meaning doctors have to make a tough choice. One of the deciding factors is adherence to treatment in previous stages, and in Belarus a key risk factor for poor adherence, according to an MSF survey conducted in 2016: is alcohol use disorder.

‘A major barrier to adherence to TB treatment is alcohol use disorder (AUD). The Ministry of Health of Belarus is aware of this, and has indicated its willingness to work with MSF on this. We are now in the process of negotiating the details of an approach that addresses both issues to enable TB patients suffering from AUD to have a good outcome to treatment,’ states doctor Parvati Nair, MSF’s Medical Activity Manager in the country.

In Belarus, MSF is working closely with the Ministry of Health to improve outcomes for patients with multidrug resistant and extensively drug resistant tuberculosis (MDR and XDR TB) and help them stay on treatment, without interruption. Ensuring there’s a patient support service for mental health is a huge part of meeting the latter part of this objective. MSF counsellors and social workers are trained and assigned to provide psychological and social support to each of the patients.

‘I see the counsellor’s task – and that’s how he sees his task as well - not in just helping the patient, but in motivating them,’ Dr Khmyz says. ‘Currently for the ambulatory phase we have a day hospital that is attended primarily by outpatients receiving Imipenem, an injectable, twice a day - in the morning and in the evening. Minsk is a big city, it’s difficult to come to the hospital twice a day from another part of the city,’ Dr Khmyz acknowledges.

But it’s not just new treatments and medications providing hope for TB patients: new technology is also playing a part. For some patients in Belarus who are not on a treatment that requires injections, a new app is making their treatment, which can last up to and beyond 24 months, easier. This pilot project aims to lessen the disruption to patients’ lives by ensuring they don’t have to make multiple trips to the Hospital to take their medication. The patient receives enough medication for several days in advance and the medics help manage the intake of the drugs with an app installed on the patient’s phone, requiring a video ‘log’ each time they take their pills. So far, this treatment option is only in its early stages, but it’s hoped it will lead to a more flexible treatment plan for patients.

‘You certainly get tired in two years. But what one can do. Thank god it has helped. If it wasn’t for this treatment we wouldn’t be speaking here right now,’ – says Yury matter-of-factly. He is obviously used to this thought and phrase. For patients like Yury, who’ve gone from having no medical options left to being cured, a combination of new technologies and medications – means more effective treatment - and in some cases - the difference between life or death.

In the WHO Global tuberculosis report, 2016, Belarus is ranked as one of the highest-burden MDR-TB countries. MSF is supporting the Ministry of Health in four TB facilities to address these high rates: the Republican Scientific and Practical Centre of Pulmonology and Tuberculosis (RSPC PT), 1st and 2nd City TB dispensaries in Minsk, and City TB hospital in Volkovichi, Minsk region. About 70-75 patients each month are provided with psychosocial support (counselling, food parcels, transport vouchers, support by social workers) to help them stay on their treatment. So far MSF has provided treatment to nearly 60 patients, with new TB drugs supplied through the endTB project. Working in 15 countries, endTB is a partnership between MSF, Partners in Health, Interactive Research & Development and donor UNITAID, aiming to find less toxic and more effective TB treatments. You can read more about the program at endTB.org.